Adult Congenital Heart Disease

Medical and surgical breakthroughs over the past few decades have dramatically improved outcomes for children with congenital heart disease (CHD) The Pediatric Heart Center at The Children's Hospital at Montefiore (CHAM) has remained on the cutting edge of these developments and continues to plan for the growing population of teenagers and adults living with CHD.

"Twenty or thirty years ago the survival rate after open heart surgery was just 60-70%," notes Daphne Hsu, MD, Chief, Pediatric Cardiology at CHAM. "At the time, no one thought these babies would make it out of infancy." Now more than 90% of children born with heart defects are expected to live to and through adulthood, which has led to a significant increase in the number of adults living with congenital heart disease. "Today we have more adults living with congenital heart disease than children with CHD," Dr. Hsu observes. "That's never happened before in the history of medicine."

Approximately 1,000,000 adults in the United States and 800,000 children are living with CHD. As a result, the nation is facing new challenges, such as the shortage of cardiologists trained to care for adults with CHD. George Lui, MD, Director of Adult Congenital Heart Disease at CHAM and Montefiore Medical Center, hails from the Harvard Combined Medicine and Pediatrics Program and Columbia University Medical Center, where he concentrated on caring for adults with congenital heart disease. 

"Pediatric cardiologists have been caring for these individuals their entire lives," Dr. Lui states. "But ideally, adult patients with CHD should be treated by a cardiologist who is trained in pediatrics and adult congenital heart medicine to understand the unique needs of both."

CHAM's Distinguished Transition Program

Spearheaded by Dr. Lui, CHAM is developing the first transitional program in the New York metropolitan region to help teenagers seamlessly transfer from pediatric to adult congenital heart care. "I want teenage patients to begin to identify with an expert in the adult community who will, at some point, bring them into adult cardiology. As these patients reach adulthood, they often leave the medical system and then re-present during a crisis later in their 20s or 30s," Dr. Lui states. "Unless they receive close follow-up care, they may fall through the cracks in the transition from pediatric to adult cardiology."

Even though many patients in their later teen years or early twenties believe they are cured, issues can arise later in life. In fact, 50% of heart defect patients born with more complex problems face a high risk of developing new heart complications as they age. Some may develop exercise intolerance (shortness of breath), while others may acquire an arrhythmia or even suffer a stroke. However, many of these complications can be properly managed - or even prevented - with regular monitoring of the heart.

Excellence in Expertise and Multidisciplinary Care for Congenital Heart Disease

At CHAM, patients are treating by the region's leading pediatric and adult cardiac experts. The core of our mission at the Adult Congenital Heart Disease Program is providing the highest quality continuum of care throughout our patients' lives. More than 20 types of congenital heart disease - and various strains of each - exist, so it is essential for a congenital heart team to understand the differences. Our multidisciplinary team works closely with the internationally recognized Montefiore-Einstein Heart Center (MEHC) to offer every available cardiac treatment and service. This includes services provided by the area's most experienced cardiac interventionalists, electrophysiologists and cardiac surgeons, as well as heart failure treatment and cardiac transplantation, and national leadership in cardiac clinical research.

"We have all the expertise and tools to diagnose and treat every type of congenital heart disease," Dr. Lui states. "We also extend the family-centered care at CHAM to the Montefiore Adult Congenital Heart Disease Program because we recognize how essential patients' parents and social networks are to their cardiac success. One person can't handle this disease alone. It requires a team."